You think you have long COVID: What now?

Penn Medicine’s long COVID clinic assists patients with an array of symptoms including persistent fatigue, difficulty breathing, insomnia, and ‘brain fog.’

Since COVID-19 became the world’s most far-reaching modern pandemic, long COVID has affected a significant number of people: As of January 2023, a survey from the Kaiser Family Foundation showed that 28% of the people it surveyed either have had long COVID or still have it.

This crisis spurred the creation of a collection of long COVID clinics. The Penn Medicine Post-COVID Assessment and Recovery Clinic was among the first, established at the tail end of COVID’s first wave in late spring 2020. Benjamin Abramoff, an assistant professor of physical medicine and rehabilitation in the Perelman School of Medicine, became an expert in long COVID and leads the Penn Medicine clinic.

Outline of human body with the head surrounded by clouds, implying brain fog.
Image: iStock/Pandagolik

In September 2020, Frantz Dickerson caught COVID-19. Initially, Dickerson dealt with mainly with exhaustion, but his wife, a nurse, eventually measured his blood oxygen levels and found them low: Normal readings find between 100 and 95% of oxygen in a person’s blood, but Dickerson was below 90. So it was off to the hospital.

He spent three days there until his oxygen levels went up. By mid-October, Dickerson felt like he’d recovered from his “main issues” and was ready to go back to work as an elevator sales and repair representative.

But when he returned to work, he noticed some difficult lingering issues, especially tied to exhaustion and brain fog.

“My brain was like a 10-lane highway before COVID, and, suddenly, it was a two-lane road with a traffic jam,” Dickerson recalls. Dickerson’s story is not uncommon.

And while Dickerson was eventually able to get help from Penn Medicine’s team and others, some patients have difficulty determining where and how to get care. Because long COVID, in many ways, remains mysterious, recognition of it and determining the right treatments can remain difficult. For many patients, it can be a difficult journey from the first step to the last, and that includes just assessing, at the beginning, what’s happening with your own body.

Self-identification is an important initial step. COVID-19 takes a while to clear from your system and can leave some symptoms that will linger. But are they long COVID?

“I think the World Health Organization definition of long COVID is a pretty good place to start: New or worsening of symptoms three months after COVID infection with symptoms lasting at least two months, without any other explanation,” says Abramoff.

Common symptoms include persistent fatigue, difficulty breathing, insomnia, and “brain fog,” which can be tied to memory issues. Other symptoms range from mental health (feelings of depression and anxiety) to the physical (joint pain, headaches, and gastrointestinal issues). A person who experiences these symptoms for several months following their COVID infection should go to a primary care doctor, Abramoff says.

“Long COVID is often a diagnosis of exclusion,” Abramoff says. “So visiting your primary care doctor is important because that will help eliminate other potential causes of ongoing symptoms and they can initiate some treatment approaches.”

If symptoms persist, it’s possible that the doctor may refer patients to a specialized long COVID clinic, like Penn Medicine’s.

A frustrating aspect of recovery from long COVID—but one that’s important to remember—is that it may not be a strictly linear process. Fatigue, for example, is often the most difficult symptom to overcome.

“The typical course of long COVID tends to include fluctuations with good days and bad days,” Abramoff says. “Certain patients also have triggers that can worsen symptoms as well, which could include overexertion, whether that comes from exercise or mental or emotional sources. New illnesses can also cause problems.”

This story is by Frank Otto. Read more at Penn Medicine News.